For generations, kids have been warned by their parents to not “put them in a home” when they get too old to care for themselves. But why is that? There is a stigma around placing our elderly in the care of others, especially in seemingly harsh and sterile nursing homes, but with no cultural framework in America for intergenerational family homes, there are few other options. Dr. Atul Gawande, a surgeon, public health researcher, and the Assistant Administrator for Global Health at USAID, wants to bring our attention to how we treat those in the last years of their lives as their health starts to fail them and look toward a future of more involved and personalized care. His book, Being Mortal: Medicine and What Matters in the End (2016’s One Book One Lincoln) may seem morbid, but Gawande writes with knowing compassion and professionalism giving insight and tools for caregivers and those who need end of life care.
Son of immigrant doctors from India, Dr. Atul Gawande’s first introduction to the elderly was his grandfather who lived on his own land surrounded by family and riding horses until he passed at 110 years old. It was a communal end of life that is not familiar in the United States, where aging and death are taboo topics. There is a shame in needing help, and the sacrifice of freedom that it often brings. Interspersed with personal stories of his ailing father, friends, and patients, Being Mortal takes the reader through the medical side of caring for those at the end of their lives, and how often the goals of treatment can outweigh the wishes of the dying. Through his years of practice, Dr. Gawande began to ask himself difficult questions concerning his very field. When does prolonging life through technology and medicine begin to harm the patient? Comparing notes and practices between nursing homes, assisted living, hospice, and independent communities, he found that when people are given a chance at informed and substantive comfort for end-of-life care, they not only experience less suffering but they live longer. Dr. Gawande argues for giving the patient a “reason to live”, even if they know it’s their last days. Interventions simple as a garden or a pet can evoke powerful changes in how we exit our lives fulfilled.
“Our ultimate goal, after all, is not a good death but a good life to the very end.”
Atul Gawande
With The Americans with Disabilities Act, turning 34 this year, we must reconcile that how we care for our aging/ end-of-life population is a disability issue at its core. One of Being Mortal’s biggest talking points focuses on the loss of independence that comes with nursing homes and hospice care. Residents lose what little control over their schedule that they had when put into these systems. In a quality of life assessment by The Down Syndrome Educational Trust, people with Down Syndrome or other intellectual disabilities, aged 45 and above, “expressed a desire to be allowed to go to bed when they wanted to”. Our care homes are consistently taking away the agency of the elderly and disabled. There’s a saying that everyone will eventually become disabled, it’s not a matter of if, but when. And with 71.5 million baby boomers reaching 65 by 2030 [X], we will need more robust services to care for a larger aging population than we have ever had. Are we ready for that? And are these 71.5 million people and their families prepared for the difficult decision of end-of-life care?
Being Mortal may not seem like the most chipper choice for a Book Club Group but with our rapidly aging population, there is a lot to be gained from community insights on how we want to be treated at our most vulnerable and in turn it will expand our understanding of each other.
If you’re interested in requesting Being Mortal for your book club, you can find the Request Form here. There are 17 copies, 2 Audio CDs, and 1 Large Print available. (A librarian must request items) Gawande, Atul. Being Mortal. Picador. 2017
